My Husband, My Life, My Love, My Family, My Cancer
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Sondra, I am sorry about the NHS issues, sounds similar to some of my province's health care issues.
Sunshine, protein powder for sure, ice cream if you can stomach it, blending the meals with protein powder. Smaller amounts throughout the day as the protein will fill you right up. I am in your pocket for all the illlness you are dealing with.
Denny still in your pocket sending healing thoughts.
Irish, in your pocket as well for healing thoughts as well.
Dodgers, start with MO I would think if you are suspecting chemo bringing down your oxygen and EF function. If it is the drug, they may have to adjust it. If they don't suspect chemo, they can refer you else. Call your cancer doctor first and start from there.
Denny, I know the feeling of boredom when I felt fine. Even when I was first dx officially with the brain met, I was admitted on a friday and had to stay til the tuesday after. I stayed less time after brain surgery, I fractured my feet pacing in circles both times.
Mel, I hope today finds you closer to a solution.
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My day started out weird. Checking email and I get this message from Facebook that my account was hacked. I thought what the heck. I then went to change my password and FB told me I was commenting to much, I was like huh so checked my facebook activity. I started thinking someone was phishing for info so I totally changed my password and think I will keep doing regularly. One of my FB friends sent a weird message that said facebook was going to charge money and I should post some statement on my wall. I did not do that and wrote on my FB friends wall to change her password and told what she supposedly wrote.
Other than that, major laundry happening, got behind. Not planning a trip anywhere today. Dropped Disney plus, I noticed the subscription ran out but don't want to resubscribe as my Amazon Prime is coming up in August, I get streaming mostly through that and youtube.
I know people think I make good stuff. My supper was gross though I still ate it. I did not chop up my beans and I don't like the texture when chewing beans which is why they are ground with the wheat bran and cheese. I prefer the sort of ground beef. Decided not to rock the boat, make beans, cheese and whatever else chopped and not be so lazy. Made up some rice and will likely heat up the mixture in a fry pan for a change of pace. Eggs will follow at some point today as well.
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Ok, deleted last post because it was whiny in favour of a more hopeful post. I called a number that I missed a call on and glad I did. It was an Occupational therapist and she wants to see me today at two. Fingers crossed she can show me how to get up off the floor after a fall both with and without things to hold on to. That way I have PT to prevent falling and OT to help me if I do fall.
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Mara, I received 3 emails this morning with a code to change my FB password. I alerted them that I made no request and my account looks ok. If it ever gets hacked, I’ll be done with it, as I rarely use it as it is.
My cucumber and squash plants are flowering finally, everything else has been lost to mice, little f-ers.
Way more tolerable weather today, in the 80’s with a nice breeze. Feels like today is going to be a good day.
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Good that it was not only me. I don't usually fall for those often and the fact that my friend also had an issue let me make a password no one will get. I plan to change it regularly too.
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Denny~thank you for the information. I’ve been taking notes and am discussing potential options with palliative care. Thank you for taking the time to share your experience. I need all the help I can get. I hope you’re doing well and having a good summer. Thanks again. Hope all you other ladies are doing well. Mae~ glad to hear your news. Hope you’ve cooled off some. It’s been strange summer weather here too. Hugs to all.
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Emac - I just want to say that I am so glad to see that you found someone else who you can talk to about your recent diagnosis. It doesn't sound common, and to have at least one other person who "gets it" that you can share with, would be so comforting and helpful. Good going!
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So the OT was just here. A few things she added to PT exercises, adding a grab bar for the tub but for the edge of the tub when standing up from showering. Something for the edge of my bed when getting up and adding a service Paratransit that will pick me up at the door which is nice. Once that is set up, I can use that and it does not cost more than bus rides and some hours are free, just have to phone 3 days ahead. Not sure when that will start.
She does not want me to practice a bunch on the getting nor is she wanting me to worry about getting up without help outside. I got down and up 3 times, third time was most difficult but she said it was fine to use my yoga mat, feeling more encouraged and think that will be my push to being more diligent with everything every morning.
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Denny10- when I had septicemia I was able to be discharged home once my blood cultures showed the antibiotics were working. They put a type of indwelling IV line in my inner arm and pharmacy delivered the antibiotics in syringes that screwed into the line. and saline to flush etc. I had another 10 days to go- really didn't want to hang out in the hospital. my DH did it- super easy and so happy to be home for it, then nurse removed the line.
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Watched an amazing air show (of sorts), a falcon was dive bombing ravens and vultures. Falcons can dive up to 175 mph, it was thrilling 😁
We named him fast Freddy, lol
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That is really amazing Mae. Glad you enjoyed the show and a clever name for him.
Well, my area survived a very bad cluster of thunderstorms. We were under tornado warnings and for a while, the wind wend sideways and was whistling quite a bit, bad enough my Tigger my orange guy was hiding under the couch, left his food bowl on the edge of the couch. Storm left the area by the time old DB came to head to Costco but the one costco had no power so we headed north instead. Many downed trees in my neighborhood as well as powerlines down. It knocked out my power so my internet is not working. Using phone data at the moment. On the plus side, had a good time.
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I want to provide an update on my friend, and only for info purposes, the cancer is quite aggressive, it is in her breast, 2x liver and her kidneys. She is indeed in a care program to keep her feeling as well as possible for as long as possible but the thinking is it may not be that long. We are all coming together to keep the family fed and well, and able to keep on being a normal happy family.
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I’m so sorry to read about everyone’s struggles that are piling on you all at once. My heart goes out to everyone here. It hurts my heart knowing your struggles.
@micmel , I know how painful those mouth sores are.,I too have had them like that and going down my throat. Can you talk with your care team about Palatiave Support treatment? Talk to them. What you are going through is extremely painful. At this point you need the help that @denny10 got. In the meantime try taking probiotics. I take “Probitotic 10” you can get at ShopRite. If the sores are from a yeast infection in your mouth (Thrush) the probiotic and yogurt can help..If it’s a virus in your mouth, or a reaction from your treatment meds, brush your teeth with baking soda and then swish your mouth with Luke warm water & Arm & Hammer baking soda in the morning, and after you eat throughout the day. It seems. To soothe it, and it always helped me. When I went through this. 2 tsp to a large shot glass of lukewarm water, swish & gargle and spit it out, Don’t swallow. it must work to change the PH in your mouth, but it has always resolved my mouth sores, not only during chemo but if they accompanied a virus, it always helped to not only soothe but also cause the to subside and disappear. I hope this works or you, Mel, until you talk to your MO.
@illimae @irishlove @candy-678 @candy-678 @dodgersgirl @sondraf @sunshine99
@cookie54 @intolight @mara51506 and every single one of you who are hurting this week, and I apologize for not mentioning you, I have read your experiences and frustration ,fear struggles, I hope and pray your night finds you with restful painless and worry free sleep. Love to you all.
💕Barb💕
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Mara-Sounds like you got a lot of practical help from the OT person. The transit service should be especially useful. Good for you to be able to get up 3 times from the floor!
Emac-Thinking of you and hoping the Piqray situation gets resolved soon.
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Thank you Chicagoan, I can feel it today for sure. I did get out to Costco with DB after the storm blew threw, left my window soaked in the bedroom, it was blocked up by the AC but the force of the winds forced some of it threw and the paint job is chipping anyway, put threw repair request, plaster is chipping. My neighbourhood had tons of down tree limbs, we got large hail and all spent time in torda
I supposedly will have someone deliver and install a bath tub grab bar on the edge of the tub and my nurse will be calling. I am working on laundry, extremely tired due to trying to clean up the mess on the window sill and the internet was extra stubborn as well though I think I have a routine way to fix. I did not get any sleep to speak of so going to try NOT to sleep early in the evening to straighten out body clock. I was supposed to start with PT but energy level is in super low, lower than usual so more of a rest day is in order. after breakfast, just having eggs, canned chicken which I will share with cats as well, will just cook up in the sausage maker, I generally enjoy eggs best from that. Another option is some greek salad I got at Costco, might try that now and see how that helps my energy. I have none and all it wants is to sleep. I may give into that after I talk to nurse (regular appointment) and no idea when the medical equipment people will get here.
Greek salad was very good, will combine with my canned chicken and possibly an egg
Other than that, all things considered, I am doing well, itching to put myself down and get up again but will obey the advice to wait until OT is here next week. Besides after the horrendous night of non sleep, I am almost out of energy for anything today, have been from the start and feel like that is a free 911 call again. As far as the energy or lack thereof, lack of sleep is the culprit, other than that I feel fine. Chores are being chipped away at a little at a time. Major purging going on this weekend and major organization to happen, even pulling out the sofa to see whats back there storage wise. My place is not pretty and super tiny without much functional storage. By the same token, there are a lot of boxes not in use. Going to store things in groups as well. Will take a long time but I can do it over time. Have to spend my energy wisely tomorrow. One side point, I am starting to pick up that me feet are not going the right way sooner than I had been before which is helpful in preventing falls.
In pockets for everyone who needs it as well as hoping everyone has a good day.
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Got a MyChart message yesterday confirming that the last two stable brain lesions noted on previous MRI’s could not been seen on the one from a couple weeks ago, only the “enhancement”. The enhancement is likely cancer but with that being the only thing in brain and body and unconfirmed, technically, I could be NEAD. It’s just a term and I’m happy with stable too but it is nice to be so close. Enhertu rocks.
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Good Morning All.
It’s very grey and overcast today. Very humid. It matches my emotions today. This is all still so new to me being on Stage IV forum, and getting to “know” you all along with our struggles with metastatic breast cancer. I just want to say I am so very saddened for what @nicolerod is bearing personally. I Pray she will be able to make her move to SC. It broke my heart to read her goodbye. To everyone. I have been talking to my Heavenly Father in evening and morning prayers and breath prayers throughout the day that our sister makes it to SC to be with her Son and his family with her husband.😢💔 Love to you all.
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@illimae - woot woot on stable and possibly NED. Congratulations!!!
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Mara, I hear you about the sleep. I “try” to limit my afternoon naps to under 30 minutes, but when it’s 5 pm and I’m SO tired, it’s hard not just lay down and sleep. I still haven’t figured it out. I did have a decent night last night. According to my FitBit I slept from around 12:30 am until 6 am. I wish I had the perfect answer for sleeping. It doesn’t help that DH can get into bed and be snoring 3 minutes after his head hits the pillow!
Mae, it’s nice to see the word “stable” on your report.
Shanagirl, seeing “Stage IV” or “metastatic” on our reports can, indeed, rock our worlds. I can’t tell you how many times I read and reread that word. This forum has been such a comfort to me. Prayer gets me through, too. Have you checked out the “thread for middle age to older Christian women”? It’s a wonderful group. Forgive me if you’re already there and I just didn’t notice. We’re all stages there but it really is a lovely group.
A good friend dropped off a bunch of food for me yesterday. Two home-made dishes and a bunch of groceries that I should be able to swallow. One dish was gnocchi in a cream sauce. I was eating it before she was half a block away. It had mushrooms and spinach, and I was able to swallow it without a problem. She also made some cheesy grits with smoked Gouda. Also yum. She brought me puddings, applesauce, polenta, Premier Protein drinks, and more. I was SO touched! This friend is a woman I met in my knitting group, and we just hit it off. I feel so blessed to have her as a friend.
Waving hi to all my lovely ladies here. Mel, how is your mouth today?
Carol
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Mae - Oh man I needed good news today! I am so happy for you.
Mel - I agree with the suggestion of reaching out to palliative or your MO. Maybe you've done that already. It just seems there must be something out there. There is something they use here called "miracle mouth wash" that is used a lot for esophagitis. It's lidocaine and a bicarb of some sort. Not sure what's all in it but it might make an effective mouthwash too.
Mara - I'm glad you weren't hurt and didn't have too much damage in the storm. They can be fun to watch but man alive, the whole world is going crazy this summer with weather it seems!
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mara We had some storms roll through here last night into wee hours this morning. Daisy is a mess in storms and I have been up since 4AM with her. I hope you had a restful day and we both get some good sleep tonight!
Mae I love that Enhurtu is doing it's job cheers to close to NEAD, sounds good to me!
Shana Ugh yes I am a year now Stage IV and it's been a long road with peaks and valleys before I got here. It is a lot to digest and somedays I'm better than others as we all are. Honestly I don't know if we ever truly accept it. Yes many of our stories are heartbreaking and we all have our story to tell. It can definitely be a bittersweet forum at times because we truly care and are here for each other. I hope Nicole makes it to SC too. Big hugs.
sunshine What a sweet friend to be blessed with and a good cook too lol. That's just wonderful and I hope you are able to enjoy it , all sounds yummy to me. Enjoy!
Thinking of all you who are hitting a rough patch lately, sending love and prayers.
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ladies hello ! Thinking of you all before bed tonight. Last night we too had storms around. 300 am. I’m hoping to sleep good tonight I’ve spoken to my palliative care doc and we are trying something new. So wish me luck. I hope everyone trying new treatments or changing tx I’m in your pocket.
someone very close to me had their first chemo and it was rough. I’m hating cancer more and more everyday we all have to suffer the cancer game. I think of you all the time ladies. Hugs to all. No word from Sadie I see. That’s really not a good sign. . It’s been too long now. 😞2 -
illimae,
What dose are you on with Enhertu? Is it the same dose you started on or is it a reduced dose to lessen side effects?
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Evening all you lovely ladies and gents that may be lurking. In pocket duty and holding all close to my heart.
@illimae Oh my gosh we sure needed to hear some good news and girl, you rocked it.
@Nicolerod is in my heart. May she get that time with her family, she so justly deserves this. I could never understand a stage 0 to stage 4 diagnosis, as she was dealt that hand. I just read her message on the liver mets forum and feel the need to edit my post. All my love to you dear sweetheart and your family and pray for your needs to be met.
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@irishlove the NASH thing is something I am wondering about, as we all know, you dont THINK something can happen to you until it does. He did get a letter through from the NHS yesterday for an ultrasound date at another hospital on 31 July - I have him keeping that for now pending the private checkup/bloods next week. At least the bus runs straight to THAT hospital (hospital is a generous term, it looks like an old recreational hall) and not the other one he spent time at.
@emac877 I hope you can get settled in quickly on the new drugs and lifestyle once you get over the 'change' paperwork and adjustments.
@illimae wonderful results! How long have you been on Enhertu now?
Weather here is mid 60s and dreary. A good storm would certainly mix things up! I think maybe Ill craft today or bake a loaf cake. End of my second Xeloda cycle so dont feel like eating much and feeling a bit run down. On the plus side, Ive noted that my sitz bone met hasn't hurt in about 24 hours. Really really hoping its healing because its a literal pain in the ass and its been causing drama for way too long.
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I am feeling better today, was asleep from 8 pm and woke at 7am, my body needed it obviously. Yesterday was kind of funny because my wellness check/friend called at her usual time, we were still talking and another nurse, not the usual one phoned at the same time, he wanted to come for a wound dressing. I said I was not having a wound dressing. My regular guy was off. I suggested he do the questions so it was not a waste of time for him. I am not sure what it is but I make people want to chat on the phone even if I stick to business. Funny.
Presently doing large load of laundry. Not sure what to have, probably 1/2 cup beans chopped and mixed with wheat bran, chopped up, that batch will be microwaved after putting a couple hashbrowns in the microwave. Eggs and english muffin after, make as the egg mcmuffin. I honestly like the eggs done in the sandwich maker best. I did wind up adding a few dry bits of the stuff and stuff, flavour and crunch appeal to me. I added a small amount of chicken stock powder with ranch and mayo, just about a tbsp total of those. Dash of salt, sliced up hashbrown, came out delicious.
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Thanks everyone!
I started Enheru last May with one bone met, which had been treated with radiation and was already healed and 6 brain mets (2 previously treated with radiation and 4 new spots). Within 3 months (my 1st scans on Enhertu), all had shrunk, even an old one from 2018. By February, 3 had disappeared and 3 were further reduced but stable, so I opted for a dose reduction to 80% due to extreme fatigue. That’s also when we first saw the new spot that was assumed to be a blood vessel. The reduction was great, returning me to normal basically. In May, that blood vessel thing (enhancement) looked more like a brain met and the 3 spots were still noted with mild improvement. So an MRI was done in July to determine what the mystery spot was but it has not changed, however, the last 3 known mets could no longer be seen.DH thinks it’s great but he can’t appreciate what having no confirmed active cancer does for your general outlook and I don’t expect him to but I know you all get it. And I know things change but from now until scans in September, I feel freed and calm.
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illimae congratulations , I am pleased Enheru is working for you , long may the feeling of calm and freedom continue.
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Mae- Glad to read you are doing well. I am on a Zoom support group of local people with Stage 4 cancer. 2 of the ladies are on Enhertu and Trodelvy (aren't they similar drugs?) and they are really struggling. Both have had horrid diarrhea. One of the ladies said it is not "get-out-of-the-way" when she needs to get to the bathroom, she doesn't even have the urge, but just goes in her pants. It is that bad. Both say that this drug is the worst treatment they have been on, for the side effects that is.
And one lady on these boards (RK2020?) is on Enhertu and said the first round was really rough.
I am HER2 low, and I don't know if Enhertu/Trodelvy is in my future, but I was dreading it for that side effect. But you give me hope that it is doable, with dose modifications.
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gotta love some good news. Sending hugs and positive thoughts to you Mae! 💐🍫🧁
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